Bringing comfort and empowerment to seriously ill patients

New palliative care program trains physicians to focus on quality of life

When Jennifer Cohen decided to pursue a fellowship in palliative care, she had difficulty finding a program that was open to pediatricians like her. Most people — and academic programs — associate palliative care solely with end-of-life, or hospice, care for adults.

“It’s actually much more,” said Cohen. “Palliative care is about helping patients of all ages and their families deal with serious illness — something every doctor should know.”

“The fellowship offers experiences in a variety of settings and with a wide range of patient experiences — inpatient, outpatient, adult, pediatric. No other program is so complete,” said Cohen, who is the first to participate in the new medical training program.

Adjusting to life with disease

Palliative care is an emerging medical field that helps patients adjust to life with conditions such as COPD (chronic obstructive pulmonary disease), cancer, AIDS and heart failure. In addition to providing medical treatment, physicians with this subspecialty training help with questions such as:

Where do you want your treatment to take place?

How do you want to manage pain?

How much technological intervention do you want to include in your care?

Do you want to participate in research?

“Palliative care closes the gap between treating disease and treating people.”— John MacMillan

“There are many options available, and physicians need to help patients understand what those options actually mean,” said John MacMillan, clinical professor of internal medicine at UC Davis and director of the fellowship program. “Palliative care closes the gap between treating disease and treating people.”

Quy Tran experienced that gap both as a son caring for his mother through cancer treatment and during his own medical education.

“My mom’s physician meant well, but we felt rushed and didn’t get the sense that he wanted to meet our needs,” said Tran, who today is an inpatient cancer physician at the Sacramento VA Medical Center and assistant clinical professor at UC Davis. “As a medical student and resident, I discovered there simply isn’t a lot of formal training that helps doctors address the patient as a whole person.”

To bridge that gap, Tran and MacMillan launched the UC Davis Hospice and Palliative Medicine Fellowship in 2012 with funding from UC Davis, Kaiser Permanente, VA Northern California Health Care System and SAFE Credit Union. Up to two participants are admitted to the one-year program, which includes a research component. Cohen is assessing the needs of expecting parents whose babies are not expected to survive. Opportunities for a second, research-focused year also are possible.

Beyond primary care

While doctors who practice palliative care often come from primary care fields, MacMillan says the approach is useful for specialists like psychiatrists, cardiologists, neurologists, pulmonary physicians and surgeons who help patients navigate life with long-term illness. He also hopes to extend the training in the future to include nurse practitioners, chaplains, social workers and others.

“As baby boomers age and chronic disease diagnoses continue to increase, the need for palliative care services will expand far beyond what physicians specifically trained in this specialty can provide by themselves,” MacMillan said. “Every member of the care team should be comfortable acknowledging when a patient is ill and understanding the patient’s wishes — well beyond just handing out ‘do not resuscitate’ forms.”

According to Cohen, although compassion and communication skills are useful, the training — including intensive reading, online scenarios, working with patient-actors, expert mentorship and delivering patient care — is truly preparing her for situations she will encounter. The fellowship is also exposing her to a variety of practice approaches with rotations at UC Davis, Shriners Hospitals for Children – Northern California, VA Northern California Health Care System, Kaiser Permanente, George Mark Children’s House and the Center for AIDS Research, Education and Services (CARES).

Cohen’s most valuable education so far has been in the art of facilitation. Differences of opinions about what is best for a patient can arise among patients and their families or among health-care team members, who can become personally involved with patients. The conflicting views can be confusing and counterproductive.

“I’m learning to bring divergent opinions together in ways that ensures that the patient’s desires are brought forward and honored,” she said.